Mended Little Hearts Open Forum

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  • 1.  Please Help

    Posted 03-16-2020 22:21
    Hey all. New here. And I'll be honest, I wish I didn't have to be here at all. No offense. Forgive me if this is jumbled - my brain is a mess and I'm just getting familiar with the terms and everything. 

    My wife is 23 weeks pregnant with our 2nd daughter. We've had a lot of miscarriages and are very excited to have her in July. At our anatomy scan last week, we were told she may have a small hole that we could wait to try to look at again in a month or go to the local Children's Hospital for a better look (better tech). To minimize our anxiety, we chose option B and felt pretty confident that it wasn't going to be anything bad since our OB was so relaxed about it and worst case scenario, there would be a small hole and our 'online research' showed those usually heal themselves. 

    We were wrong. 

    After about 2.5 hours of ultrasound (she wouldn't sit still), our lives changed when we were told our sweet Julia would be born with multiple heart defects. We're crushed. We're scared, angry, worried, sad, and everything in between. Why is this happening? We've gone thru so much just to get pregnant and now this. Crushing. 

    The doctor told us she has an atrial and ventricular septal defect. Apparently that's not a huge deal? He said it's 'fairly common' and would be an elective surgery around 5-6 months. The part that he's unsure of due to her moving so much, and would be more serious, are some issues with her aortic valve being too small for 23 weeks, possible narrowing of the aorta and a possible subvulvar stenosis. Again, they didn't get a super clear view of this but he said this would require immediate surgery as well as multiple surgeries going forward and likely a 'Norwood Procedure'. He was explaining all of this and I was taking notes as best as I could but I really had an out of body experience - I couldn't believe we were sitting there listening to that. 

    He scared us more by mentioning that sometimes this could be caused by Down's or DiGeorge's Syndrome. We have not seen any other indicators of either syndrome on ultrasounds. My wife and I both had genetic testing pre-pregnancy in the midst of our miscarriage issues and both came back normal. We'll be doing a genetic test on baby asap. 

    He was pretty level-headed with us and said he has no concerns about her making it to term or making it through these surgeries (with the info that he currently has). So that's good to hear. He said the septal defect surgery would be like a 2 on the 1-10 difficulty scale while the aorta stuff would be like a 5. I don't know if any of that makes me feel better or not. It's f'ing open heart surgery after all. 

    I don't know what I'm doing here. We go back in 3 weeks to try to get a better look at the aorta stuff. I can't wrap my head around any of this. I go from 'ok let's do this, she's gonna rock it and be healthy' to 'oh my god i'm going to have a baby with a heart defect and a disability' to 'oh my god is she going to make it' every 5 minutes or so. We're exhausted. We don't know what to do. I'm trying to turn my worry and anxiety into action which is why I'm here. I don't know. I just feel helpless. We went from being excited about our daughter to just a feeling of doom. I don't know how else to explain it. 

    I don't know how to end this. Thank you for reading. Felt good to type it out if nothing else.

    Jake Berman
    Slidell LA

  • 2.  RE: Please Help

    Posted 03-17-2020 02:16
    Hi Jake,

    Reading your post brought back a lot of emotions. I was in your same shoes 6 years ago. However, my son Grant was not diagnosed with his complex heart defects until after he was born. Grant Patrick is my 4th baby. He has 3 older sisters. I was over the moon to finally have my sweet son. Very shortly after he was born, we noticed things just weren't right. He was turning a greyish color, he was extremely lethargic, wouldn't eat, wouldn't cry, would barely move. I knew after having 3 other babies, that this was not normal. Turns out, he was extremely sick. Grant had several heart defects, including a VSD, and ASD like your daughter. He also had Transposition of the Great Arteries ( a very complex heart defect), a Co-Arctation of the Aorta, Pulmonary Stenosis, and Mitral Valve Regurgitation. We were life-flighted that day to Dallas for emergency open heart surgery. His little heart was the size of a walnut. It was the scariest day of my life. However......6 years later you would never know Grant had anything wrong with him! He swims, plays soccer, loves kindergarten, and is a social butterfly. I remember sitting in the Cardiac ICU day after day, just hoping and praying that Grant would be okay. That he would be a "normal" little boy. I wanted so badly for someone to tell me he was going to be okay. So, I would like to be that person for you. Your daughter will be okay. She will be a little princess, spoiled rotten I'm sure. She will be loved, she will live a happy, normal life. These kids are so resilient, and the CardioThorasic Surgeons who operate on these tiny babes are true heroes. It's okay to be scared, worried, sick to your stomach. You love her so much already, and it's hard to imagine your innocent little baby girl being sick. It's important to stay positive, and be thankful that you are on top of this, and aware of her situation. You and your wife can have time to prepare and make necessary arrangements. Look to the future with optimism, and know that she will be just fine. She'll just have a really cool scar to tell her story. Please reach out to me if you need to talk. Only us heart parents can truly understand. I will keep your daughter and the rest of your family in my thoughts and prayers. Hugs to you, and remember, you are not alone in this journey. 

    Jennifer Hull

    Jennifer Hull
    Springfield VA

  • 3.  RE: Please Help

    Posted 03-17-2020 03:14

    Hi Jake! Our situation was similar to yours. 17 years ago our daughter was diagnosed preliminarily in utero with hypoplastic left heart. Then it became tetralogy of Fallot, then "a lot of defects." When she was born she had a bunch of defects that didn't have a syndrome. She had VSD, ASD (what you've mentioned) she had a double outlet right ventricle and coarctation of her aorta. 

    we were so grateful they discovered this while I was pregnant and it gave us time to research the hospitals and NICUs in our area. Do your homework and ask a lot of questions. Mended Hearts will have resources in your area.

    our daughter is now 17 and had open heart surgery at 5 days. It was exhausting and emotional, very difficult but not impossible! I wish you luck and blessings and you aren't alone. It feels like a lot right now and it is but just gather info, learn about the possible surgeries, and gather a tribe of family and friends who will see you through this. 

    Jennifer Adame
    Katy TX
    (512) 466-6945

  • 4.  RE: Please Help

    Posted 03-17-2020 10:20
    Hi Jake,
    My daughter was born with a large hole in her ventricle and a small hole in her atrium. She was put on digoxin and lasix right after birth along with a high calorie additive to her bottle to fatten her up in preparation for surgery. She did not breast feed because of breathing and she did not have the energy to eat large amounts. She had open heart surgery when she was 7 months old. She did have a leak in her valve that is very minor now without surgical involvement. She had to have another angiogram when she was 10 due to her valve and ruled out surgical intervention. She sees a cardiologist yearly. She is now 22 years old . She has graduated from college with her Bachelors in nursing and currently works on a stroke unit. Her goal growing up was to someday to become a nurse to help people like the nurses helped her.  

    I was extremely overwhelmed at first as well because you don't know what to expect.The unknown can be terrifying. My daughter shares her story with her patients to give them inspiration. Take it one day at a time and love your little girl. Best wishes to your family and good luck with your daughter.

    Peggy McDonald
    Eden NY
    (716) 992-4329

  • 5.  RE: Please Help

    Posted 03-17-2020 14:57
    Hi Jake,

    I understand exactly what you and your wife are going through.  I've had three miscarriages myself, and one before becoming pregnant with my now four year old daughter Charlotte.  At my 20 week anatomy scan, we were told that Charlotte had a heart defect, a kidney defect, and possibly a rare genetic disorder like DiGeorge Syndrome (otherwise known as 22q Deletion Syndrome).  It was the worst time of my life by far.  What we found out over the second half of the pregnancy was that Charlotte had a double outlet in the right ventricle, a large VSD, and pulmonary stenosis.  We were told that she would need open heart surgery in the first year of her life, but that she would be a healthy child following the surgery.  Our cardiologist never gave us any reason to worry and was a rock for us.  He was wonderful.  We also found out that Charlotte had a left multicystic dysplastic kidney (a bad kidney), and that nothing could be done about that.  We were told that DiGeorge was suspected because Charlotte had two organ systems affected, and that is typically what is seen with DiGeorge.  We were pressured by my high risk doctor to have an amnio done, but didn't.  I had the basic blood test done to rule out Down Syndrome and the Trisomies, and Charlotte was negative for all of those.  I also changed doctors, because the high risk doctor that I was seeing was causing me more stress, and always involved students in what I considered very sensitive discussions.  

    So, here's what happened.  I stayed away from the internet entirely.  I stopped Googling all of the possible worst case scenarios and tried to enjoy my first pregnancy.  I had an uneventful pregnancy otherwise, and I put all of my faith in the words of the pediatric cardiologist: Charlotte would be fine after her surgery, and would lead a full, happy, and healthy life.  I also believed fully that I was gifted with a child with special needs for a reason, and that is humbling for me.  Charlotte was entrusted with my husband and I for a reason, and your daughter has been given to you and your wife for a reason.

    I went into labor with Charlotte on my own two weeks ahead of her due date (and late on a Friday night- the hospital staff was scrambling!).  I had an uneventful and easy labor with her, and she did very well.  At birth her heart function was good, and so she only had to stay in the NICU for 24 hours of observation.  Instead of one bad kidney and one good kidney, the doctors found one completely healthy right kidney, and an absent left kidney.  She and I learned how to breastfeed, and she came home from the hospital with us.  At three months of age, she needed her heart surgery.  It went really well, and she did amazing.  She was only in the hospital for six days.  She recovered well, picked back up with breastfeeding, started gaining weight, and life started to become "normal."  At 10 months of age, Charlotte tested positive for DiGeorge Syndrome (22q). 

    Charlotte has had a lot of challenges, sees a lot of specialists, and has therapies as well.  However, you would never know that she is a heart patient or has 22q from looking at her.  She is a kid who has no dietary or play restrictions, loves to ride her bike, swim, play with friends, and play with her seven month old baby brother.  She is really really smart too.  She is an amazing kid, and her baby brother adores her. 

    You all are going to be fine, and you've got this.  Give yourselves a break and some time to process all of this information, because honestly it is too much.  Once you've had some time, keep on the proactive path that you're on.  This is really smart of you.  Write down questions that you and your wife have before seeing the doctors.  If you don't understand something that you've been told, reach out to the doctor's office so that they can help you understand.  Ask to speak with the family advocate in the cardiologist's office.  Follow your instincts, and advocate for yourselves and your children. 

    Your daughter is going to be fine.  She is going to be an incredibly strong willed individual though, so be prepared for that!

    Amanda Goodwin
    Naples FL
    (201) 248-9216

  • 6.  RE: Please Help

    Posted 03-18-2020 12:12
    Hi Jake,
    Im sure you and your wife are in shock right now and want to know what the future holds for your family and new baby. Nothing prepares you for when a doctor tells you something is wrong with your baby's heart. My son Sam, who is now 14, was born without us knowing anything was wrong. At 9 days old, we rushed him to the hospital because he started having trouble breathing. Long story short, the ER docs told us something was wrong with his heart, and he needed surgery. He was diagnosed with coarctation of the aorta, bicuspid aortic valve and a vsd. He had open heart surgery at 15 days old and was in the hospital for about 6 weeks. Other experts who examined him told us he probably had a syndrome and may not be able to walk or talk. When we finally brought him home, I was petrified. I had no one to talk to, no support group, no online community. Just me and my husband (who is a physician) trying to deal with the enormity of what had happened and the uncertainty of our future. I watched every breath Sam took and waited anxiously for each milestone he made. Month after month, he proved to everyone how strong and resilient a baby can be. 
    Fast forward 14 years and another heart surgery when he was 8, Sam is a typical teenager. He has great friends and makes good grades despite having ADHD (which is common in kids with heart issues). He's closely monitored by his cardiologist who allows him to play sports - which may change when he gets to high school. He is starting to love golf, since that's a sport he can definitely play for the rest of his life. Regardless, he is exactly who he was meant to be, and we couldn't imagine Sam any other way. 
    We live in Houston and Sam's cardiology team, including his surgeon, is at Texas Children's, which I can't say enough wonderful things about. Do your research and figure out which hospital is best for your baby to receive treatment, but I am very familiar with TCH, so if you have any questions I can answer, I'd be happy to. Most importantly, try to take it day by day. Don't let your fear take over. And lean on each other. Thankfully, when I was weak, my husband held me up, and I did the same for him. You will get through this together. 
    Courtney Powell

    Courtney Powell
    Houston TX
    (713) 942-7130

  • 7.  RE: Please Help

    Posted 03-19-2020 23:12

    Hi Jake
    I'm Dr "E"- at least that's what most folks call me because it's easier than pronouncing my last name! 

    I'm Chief of Pediatric Cardiac Surgery at Wash U and St Louis Children's Hospital. 

    I wanted to give you some reassurance because I recognize the fear and anxiety that you and wife feel. But here are the facts: 
    1. At 23 weeks, it is not feasible to accurately measure with 100% confidence the size of the aorta and subaortic area nor to predict the outcome in the long run. 

    2. Most babies that have a large VSD don't develop hypoplastic left heart syndrome, the sort of situation that leads to needing the Norwood procedure which indeed would be a major procedure. I think he or she was providing the worst case scenario but based on what you describe highly unlikely. 

    3. The vast majority of VSDs close during the 1st year of a child's life and some become small enough that are generally inconsequential. And as you heard in couple of the scenarios described below, it's a simple 3-4 hr procedure, a day or two in icu and typically home in 5-7 days. 

    yes your child will require life long follow up with her cardiologist but that's no different than a child with asthma, ADHD and so many other things that today we can treat and manage effectively with excellent quality of life. 

    Take a deep breath. Hug your wife. I think you guys will be ok. I obviously don't have a crystal ball nor know all the details but I'm sure your doctors are just wanting to be thorough. 

    pirooz eghtesady

  • 8.  RE: Please Help

    Posted 03-20-2020 09:16
    Hi Jake, 

    I'm so glad you're here (Even though it's not for the ideal reason). My son was born with an AVSD and Down Syndrome. He just turned 11 and I still remember how devastated I was at the time. I felt alone and frightened and couldn't figure out how I was going to get through it. He was 11 weeks old when he had open heart surgery. He is thriving now! He's in 4th grade at his local elementary school, mainstreamed with his peers. If I could give any advice it is: Breathe and know you will get through this. No matter what happens, you will get through it. My son is the most amazing kid ever and I'm sure your daughter will be too. 
    Don't get caught up in the "what if" and just take things day by day. Know that right now, things are ok. And each time you get new information, know that you will handle it, and you will be amazing! 
    If you ever have questions, I'm happy to offer up my experience.Hang in there! You got this!

    Andrea Baer
    Grapeville PA
    (724) 396-7820